Accepting my new normal with MS after a series of misdiagnoses

Dimika V. Cavalier is shown in a photo she uses for advocacy work. (Photos courtesy of Dimika V. Cavalier)

Day 26 of 31

This is Dimika V. Cavalier’s story:

My journey with multiple sclerosis (MS) began in my early 30s. I was having episodes of vertigo that would last for days at a time. I was also experiencing joint pain, muscle aches, and fatigue. These symptoms progressively worsened. I initially attributed it to a poor diet, lack of exercise, and stress. So I changed my diet and began to exercise more, but it didn’t help.

On several occasions, doctors diagnosed it as benign paroxysmal positional vertigo, prescribed something for the nausea, and sent me on my way.

Cavalier proudly displays her recognition as one of the top 10 fundraisers in the MS Walk Memphis 2024.

By 2016, the episodes had become incapacitating, and I was referred to an ear, nose, and throat (ENT) doctor, who ruled out benign paroxysmal positional vertigo because the episodes lasted so long. After an MRI and inner ear function testing, I was diagnosed with vestibular migraines. The radiologist had reported the lesions they’d found were less likely to be due to a demyelinating disease like MS.

The ENT recommended I follow up with a neurologist. I consulted with two, and both concurred with the diagnosis of vestibular migraines and prescribed a treatment plan for that.

But I continued experiencing incapacitating vertigo, joint pain, muscle aches, and fatigue. I concluded that since I had changed everything else, my symptoms had to be stress-induced. In 2017, I decided to resign from my career as a forensic scientist. Yet even with this change, I was still experiencing symptoms.

By 2018, I had relocated and had a different healthcare team. I was referred to a neurologist who recommended I have another MRI. This time, enhancing lesions (abnormal tissue in medical imaging) appeared. I received an MS diagnosis on Oct. 31, 2019, at 43 years old.

I began taking the pill form of a disease-modifying therapy (DMT) that November. I experienced relapses with that treatment, so I began infusion therapy in September 2020. Fortunately, my MRIs have remained stable since then, but I have experienced disease progression. My balance, proprioception, and cognition have declined. I also experience spasms and tingling in my extremities.

One thing I wish I’d done at the time of diagnosis is ask for symptom management treatment as well.

Dimika V. Cavalier attends one of her various medical appointments to track and treat her MS.

Making the best of my new reality has been my goal since being diagnosed. I am involved in patient engagement and advocacy efforts to elevate the patient perspective and promote diversity and inclusion in healthcare and research.

As a member of the Research Inclusion, Diversity, and Equity (RIDE) Council, an initiative of iConquerMS, I provide my perspective as a person living with MS on topics related to research, research development, research materials, healthcare, and treatment. I’ve served on advisory boards and collaborated as a patient and research partner in preferential studies. As a consumer reviewer with Congressionally Directed Medical Research Programs and a merit reviewer for the Patient-Centered Outcomes Research Institute, I assess and provide feedback on the impact and strengths of research proposals submitted for funding. I’ve also participated in various types of research to advance the understanding of MS.

In addition to adhering to prescribed treatment schedules, I practice mindfulness and eat a well-balanced diet to help with symptom management. I strive to maintain a certain level of physical activity, with varied activities based on the symptoms I experience on any given day.

I appreciate the days when I can spend a little time in the sun without my symptoms flaring. Energy is valuable and easily depleted, so I must use it wisely. Every day I remind myself to accept assistance and allow myself plenty of grace.

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MSSpotlight, or read the full series.